Early Onset: A Challenge to Diagnose

     On Thursday, the Alzheimer’s Association is pushing for a new bill in the state of Maine, LD 1072, that will require doctors and other medical staff to be trained in dementia, hospitals to develop a care plan before discharging a dementia patient, and that doctors always disclose a dementia diagnosis.
     This is our story.
     In May of 2002, my husband (age 36) went to a weekend Men’s Retreat at Camp Fair Haven. It was there, that he had a terrible accident. He rolled his four-wheeler going down a steep hill, holding on for 2 of the 3 rotations. Thankfully, he was wearing safety gear and had a helmet on. However, he remained in Trauma Care for 14 days suffering with multiple injuries that included a shattered ankle, broken collarbone, broken ribs, and a punctured lung.
     In hindsight, I do believe that this is where our Dementia story began.
     My husband is a clutz. If he can trip over, fall off, run into, or drop anything, he does. He has never accepted his limitations and has a very strong work ethic. As a result, he has sustained many injuries over time. I lovingly joke that, “He is the reason we have health insurance”.
     That same year we lost the matriarch of the family to cancer: his mother. He hit rock bottom. He could not get his bearings. It was at that time that the doctor put him on the first of many antidepressants. Many made him worse. So we would slowly wean him off one set, and wean him on another. We blamed his mood, social, and cognitive glitches on the loss of the mother that he adored.
     Over time, he has sustained 3 more significant blows to the head, participated in unsafe behavior, began self-medicating with alcohol and had what doctors classified as a classic “Midlife Crisis” in 2009. Our marriage of 22 years nearly dissolved.
     In 2010, my husband lost his father to cancer. Again, doctors continued to treat the obvious: depression. He attended counseling and weekly support groups.
     In 2013, he abruptly lost his job of 17 years after making an error on an insurance claim for a customer, submitting the claim as a “final bill” instead of a “final quote.” He had no idea that the error had been made, until a private investigator knocked on the front door to our home.
     We were denied unemployment, despite hiring lawyer #1 on half-salary, and appealing the decision twice.  His employer insisted that he made the error on purpose, although my husband clearly had nothing to gain.  It was cruel and humiliating. At that time, he was 47 years old.
     Seven months later, he was hired at a competitive company, and worked just 5 months before employers let him go. His employers thought there might be something wrong with his memory and encouraged him to see a doctor. So, a year later, to the date, my husband lost his second job.
     This is when we got serious with doctors and insisted on extensive testing.
It took two and a half years to get Social Security Disability. We were denied twice and forced to testify at a hearing with lawyer #2 for $6,000 despite medical paperwork 2 inches thick.
     In March of 2016 my husband had a stroke, which left him in a wheelchair for 10 months.
Much of what we have learned, we have learned on our own. Doctors are reluctant to answer questions because “every case is different”, and patients and caregivers are forced to reach and grab at straws. Thankfully, a specialized support group for early-onset coached us.
However, the most frustrating part of the diagnosis is that I feel like I have to be a strong advocate and educator to medical professionals and personnel. When I take him to the ER, which we frequent for Urinary Tract Infections and spikes in Blood Pressures, I have to be right by his side. I carry a fist full of papers which include his medical history, the history of his family, his multiple medication list, Medical and Financial Power of Attorney, and a DNR. This was as a result of lawyer #3 & #4, Eldercare Lawyers hired to prepare end of life paperwork & Wills.
     I have to remind professionals to talk to him and look at him while I listen. I have to coach them to put him in a quiet space, to speak slowly and simply, to dim the lights, and keep me with him as much as possible, because Dementia is huge and complicated, and nobody knows how to support and quiet nerves more than the caregiver. A huge part of the diagnosis is FEAR: fear of crowds, people, everything.
     At one point, our Primary Care Physician discussed the possibility of Home Visits. I would like to recommend that as something medical professionals consider. My husband is a very different person at home. If medical professionals want to see an accurate representation of where those diagnosed are at in their progression, I would highly recommend a home visit.
     After both his accident and his stroke, Home Health Care was fantastic. PT, OT, nursing, and social workers came to our home during the day, allowing me to continue to work full-time.
     We are young and many health care facilities aren’t accustomed to working with those diagnosed with Dementia in their late 40’s/early 50’s. As a result, many people have difficulty getting diagnosed, and are misdiagnosed for an extended period of time. At his highest point, my husband was taking 27 pills a day. I worry about the time that we are not longer able to care for him in our home. Thankfully, our youngest daughter and her family were able to move in with us and care for him by day so that I can continue to work full-time. She is taking on-line classes with a focus on Gerontology, with the hope that as he progresses, she will be better equipped to care for him and keep me working. (I’m not eligible for retirement for another 10 years.) Our older daughter has extensive training and has been an additional coach/support system for us. Although her home base is in Arkansas, she comes home for nearly every school break. I often wonder what would happen to my husband if he didn’t have such a strong support system.
     Today he is 53. We are nearing the 6 year anniversary of his diagnosis, and we are told that on average those diagnosed with Frontotemporal Dementia live 7-8 years from the time of onset. At this point, he isn’t receiving any extra medical care: no more specialists. Initially, we reached out to the Brain Center for testing, Dementia Specialist, Neurologist, PT, OT, and saw a multitude of specialists. Although he remains fairly high functioning, he just wants to live his life. Thankfully his PCP has been very supportive of our decision.
     We just need to know that when the time comes, medical personnel are adequately trained in dementia care, a care plan is provided before sending us to next steps, and that professionals are equipped to help caregivers fill out necessary paperwork for long-term care. We need to be able to access local memory care facilities equipped to work with those of early onset Dementia, so that our loved one is not housed in the same area as the elderly or those with differing mental health diagnosis. In the end, we want to easily access our loved one, and be provided the quality and affordable care that he deserves.
    Please consider testifying on behalf of those diagnosed and contact your local representatives regarding LD 1072. I did.
     Cynthia Higgins
Waldo County, Maine
     Here is a copy of the bill:

What Keeps Me Awake At Night

I woke up early this morning. I didn’t need to, but after 8 days of school, my body has morphed into school time. School time means that no mater how hard I try, my body refuses to be fooled into going back to sleep.

This morning my mind was filled with goal setting: Marshall Goals, Student Learning Objectives (SLO’s) and what I should make for priorities this year. I don’t know why my brain decided that 6:30 am on a Saturday, was a great time to make such crucial decisions.

In case you have a burning desire to know, our district uses the Kim Marshall Plan which includes an evaluation system based on teacher performance. It is divided into six categories, or domains. The domains include (1) Planning and Preparation for Learning (2) Classroom Management (3) Delivery of Instruction/Monitoring (4) Assessment, and Follow-Up (5) Family and Community Outreach and (6) Professional Responsibilities. Each domain contains 10 standards, in which supervisors rate teachers as Highly Effective, Effective, Partially Effective, or Ineffective for a total of about 60 standards. In theory, each domain, gives teachers and supervisors an opportunity to look at performance and set goals to focus on. Marshall’s rubrics are meant to clearly define criteria to distinguish the Highly Effective teacher from the Ineffective one, and all points in-between. Administrators aim to do 10, 10-minute pop-ins, with a coinciding 10 minute post observation to document progress on a teacher’s chosen goal. Last year, I had 5 classroom observations totaling 50 minutes.

On top of the Marshall goal, teachers are also expected to choose 2 Student Learning Objectives (SLO’s) that are used to target growth and measure student effectiveness. Teachers are expected to make two SMART SLO goals (Specific, Measurable, Actionable, Relevant, and Time Bound) that can measured using data points that are proven reliable.

All lesson plans need to align to Common Core Standards and reporting is done on-line by individual standards. So, not only are teachers being evaluated on an insane amount of standards, but so are children. Most importantly, teacher evaluations are directly linked to the academic success of ALL students.

For both teacher’s and student’s alike, a 4 point scoring system is used. A 4, or Highly Effective status is reserved for truly outstanding performance that meets very demanding criteria very few ratings are in this area. A 3, or Effective status describes solid, expected, professional performance. A 2, or Improvement Necessary indicates that performance has real deficiencies. A 1, or Does Not Meet, is unacceptable and can lead to dismissal unless improved on immediately.

The Marshall Model in particular is not designed to be an “I got ya'” model. However, teachers are perfectionists. They want what constitutes and A and therefore, accept suggestions and generally respond to gentle correction. However, in the world of Marshall Goals, and SLO’s, with 100% of our students expected to meet high demands, many teachers are left feeling deflated.

Fear should not be consuming me at 6:30 am after the second week of school. I know what my strengths are and what my weaknesses are. I know that I am a Highly Effective teacher and nobody can convince me that less than 2 hours of cumulative observations gives my employers a clear picture of what is happening in my classroom and enough information to fairly score me on 60 standards. Although the rubric is designed to create self-reflection, supervisors make the final scoring decisions. This means that my self reflections can be trumped by their perception of what is happening in my classroom. I do have the right to challenge final decisions by showing data. However, they don’t have to provide data that supports their perception of my performance. That is hard for highly sensitive, Type A perfectionists like me.

It used to be that I would leave school for summer vacation feeling like my supervisors noticed and appreciated the dedication and student achievement that was attained. I don’t feel that way any more. Honestly, if I had known 30 years ago what I know now about the evaluation systems for both teachers and students, I think I would have chosen another profession, and that makes me sad, because I truly love what I do and I know in my heart of hearts that I am good at it.

People say that in educations, the pendulum swings from one extreme to another. I wonder when the pendulum is going to swing again, because things need to change. Teachers should not have sleepless nights worrying about end of year evaluation results after the first 2 weeks of school. I’m not sure how, but we need to stand up and demand change. It is time. edweek-pendulum

Beware of Wolves

I am harboring a broken heart.

I have a tendency to forget that there is evil in the world. I am a joy seeker. I get up every day ready to face the world and to display kindness, and love. I want to live my life as an example. I give everyone the benefit of the doubt and I assume that everyone else has the same motives as I do. It is that mindset that allowed me to be blindsided and has left me fragile and broken-hearted.

When people see my downcast eyes they assume it is a result of my personal life. It’s  definitely part of it. There has been some pretty significant decline over the past year. We tend to measure his progression by landmarks: how he was when school started, Christmas, April Vacation, and the last day of school. The changes are generally subtle and slow, but they are there. He has good days and bad; days that he is clear and days that he is foggy. You can see the regression in his handwriting over the past year.

He gets dizzy often and his spells last longer than before. He has difficulty with sleeping. Either he sleeps all the time or hardly at all. He recognizes very few people now. Although we may talk about friends, family, and neighbors, he rarely recognizes them. Sometimes it will come to him with time, but more often, it does not. He doesn’t like going into public. It’s too scary. People think of dementia as being just about memory, but a huge part of the disease is anxiety. Too much noise, light, and confusion is more than he can sort through. Multiple conversations and movement make him shiver, stare, or shake his hands in order to self-soothe. He no longer accompanies me to church and seldom comes to family functions. I am grateful for our daughter who keeps him company during the day while I teach. I can’t imagine how lonely we would be without she and her family living with us.

He is still able to bake, and BBQ on the grill. He mows the lawn and still gardens with a vengeance. He helps with the laundry, but no longer knows how to separate the clothing. He folds with precision. He still does the dishes, and keeps the house immaculate. It amazes me that his best qualities remain his best, and worst qualities continue to be his worst. He still wishes that he could work in order to help more with the finances. He doesn’t miss driving, which is WAY too scary, and needs us to carefully monitor his medications.

Mostly, it’s fine and absolutely NOTHING compared to the year that I have had at school.

This year I had significant behavioral challenges in my classroom. Typical behaviors included ripping assignments, throwing items that ricocheted off bookshelves and walls, climbing on bookshelves & desks, overturning chairs that were balanced on a student desk and trying to sit on the top. Classroom furniture was moved around and they refused to do academic tasks, by yelling, swearing, and kicking. They ran around the classroom, refusing to join classmates, interrupting during instruction, running in one door and out the other, slamming, hanging on, and kicking doors. In fact, the glass in my door, handle, and lock were broken. In the hallway, they kicked the heater, yelled in the entryway, flicked the lights, and ran up and down the halls. They tore and ripped items off the walls, and threw classmates’ personal items down the hallway.

Some strategies that I used were preferential seating, a class behavior program,  and ”treats” when caught doing what was expected. I provided extra snacks, break times, and a nonverbal cuing system that indicated that they needed a break. I tried stress balls, and sensory calming tools. I paired them with peers and verbally rehearsed responses and aided them with graphic organizers before doing their work. I stated directions in a variety of different ways and provided visual supports. I encouraged risk taking and pre-taught lessons giving children a chance to do assessments in a small group. I provided extra attention and verbal encouragement, placing them near a friend when they felt anxious or unsure of the academic expectations. I reduced work expectations. I allocated spots to “take space”, and worked tirelessly through Class Dojo to report to parents when children were accessing a safe place, staying in the classroom, and completing class work.

In the end, the best thing for everyone was to separate them. They fed off each other and once one started to spiral, it was too easy for the others to join. But the separation came at a cost and it affected my year-end evaluation, which has crushed my spirit and left me doubting my abilities- even though I know better.

It is the third significant administrative blow for me this year and I fear that it is a direct result of my attempt at the beginning of the school year to discuss improvement needed and offer suggestions. I fear that I created a target for myself.

We have thoroughly enjoyed the shows Madam Secretary and Blue Bloods and I can’t help but make a connection between Big Politics and what I have seen in education this year and that terrifies me. There is a problem, right here in River City and it starts at the top. Lesson learned: shut up and keep my head down.

Beware of wolves in sheep’s clothing.






Lost, Hiding, and Naked

I continue to have wild dreams. My most recent ones involve being taken captive in a house that I couldn’t get out of. I would go through door after swinging door, only to meet more doors. I was running and hiding. Once outside, I was in an unknown place, in the snow, and naked. I was scared cold, afraid, and I could not find my way home. Occasionally I would meet people along the way that I recognized, but they turned away, seemed disinterested, and refused to help me. Last night I dreamt that I was living in an unknown house back on the farm. People with guns stormed my parent’s home and I was hiding a classroom full of children in my house across the street. My job was to try to keep them safe and quiet. The dream ended with a fire in just a portion of the house, and for a brief moment, I was heartbroken that I had lost one of my own children. She appeared through the rubble holding the family dog, Even as I write this, my heart breaks, and tears come to my eyes.

Why am I having such wild dreams? Friends say that I am feeling naked, exposed, and like my life is out of control. It makes sense.

I was awake in the night with a stomach ache and I was thinking about it. Maybe if I could understand my fears, I could find a solution and the dreams would stop.

This is what I have been thinking about:

I seem to have four kinds of support systems in my life and I liken them to the layers of the earth.layers-of-the-earth

The Inner Core: These are the family and friends who know the most intimate parts of my daily life. 

The Outer Core: I consider these to be my most faithful prayer supporters, and those with whom I can call on, but don’t have regular intimate contact with.

The Mantle: These are the casual observers, further removed, kind of like me with the Red Socks and the Patriots. 

The Crust: People who know we are out there, watching, but don’t have the time, the energy, or the desire to become intimately involved.

I’m sad to say that I often feel very alone and vulnerable. I am so grateful for the those who support me. The problem is that I don’t always know where people fall in my support system and it can become confusing, because my expectations for those in the crust should not be the same as those in the core. Sometimes I misjudge where people choose to be located and I think they are part of the mantle, and they are part of the outer crust, which is where they want to stay. I think sometimes people move from one layer to another and I don’t know they’ve moved, so I try to ask something of them that they can’t give me. This journey has been surprising. Shockingly, some of those that I thought would be part of the inner core are part of the crust, and those who I would have guessed would be part of the crust, are part of the outer core. It’s a puzzle, because sometimes I just can’t figure out where people want to be located in my circle and it just adds to the confusion.

I think we have this idea, when we go through adversity, that certain people will step up and be there for us. When in reality, some slide out into the crust, and that brings me great sadness. I miss people with whom I have loved and have lost.

Life continues to be busy and challenging. School comes with a whole lot of hurdles that I don’t see any immediate relief from. My parents are aging, which is creating another layer of concern. Three hospital trips since Christmas with our mother reminds me that time with my parents is limited, and that creates a whole other layer of stress. I worry about my adult children, grandchildren, home & financial responsibilities, and a failing husband which adds more and more plates to spin, and my stomach gets tighter and tighter. I don’t want to disappoint anyone and I feel like I am not doing 100% at anything I tackle these days. I am trying to be flexible, but this perfectionist is struggling. More and more is being asked of me and I just can’t keep up with the additional demands and do them well. I want to please everyone, and I can’t. I want to help everyone, but I can’t. I want to fix everything, and I can’t do that either.

Perhaps I do have good reason to dream about being alone, lost, frightened, naked and with people who look away, but unfortunately, there is little I can do about any of it. I need to just keep trying my best, putting one foot in front of the other, and pasting a smile on my face even when I don’t feel like smiling. I need to break out the glitter and the chocolate, put on some lovey 80’s music from Air Supply & steal a kiss from my favorite man, sip some coffee, and thank God for making it through just one more day.


The Joy of Laboring

I made it through WEEK 1 of being back to school with a wide variety of emotions. Honestly, my favorite man seemed to transition easier than I did. Perhaps it was because I didn’t have enough time home this summer. Maybe it is the growing burden I have as I take over more and more of our family’s responsibilities. More than likely it is the impending winter that is on our heels- and starting school is a huge reminder that we have a very small window to prepare. It is a costly process to stay warm on the mountain. Regardless of the reasons, my employment and personal challenges that are ever-changing and increasing in demands, created a mini-melt down and some tears this week.

Surprisingly, the teaching part, is the easiest part of my life. I love being with my monsters day in and day out. I am thrilled to be part of their growth and am as pleased as their parents when we see the end results in the Spring. However, I can’t agree that education, on the whole, is in a better place now than when I began in the late 80’s and the expectations for teachers has only increased. So, maybe this week I felt underappreciated, taken advantage of, and invisible.

I watched the movie COURAGEOUS this weekend. I suggest the movie to anyone. It was well done. My emotions ranged from sadness to uncontrollable laughter. Perhaps I cried a little harder and laughed a little louder in order to let out some penned-up emotions. The most meaningful part to me, was when the main character learned that it was more important to reflect on the time he had had with his loved one, than the time he wasn’t able to have. It reminded me how precious life is, and how I could meditate on what is not right in my world, or I could concentrate on what is good and precious.

So I have decided to do the courageous thing, and talk to someone who might be able to make positive changes in my workplace. I have an outline drawn up, and I will try my best to be part of the solution. I still struggle with what is best in my personal life, but I am trying not to excessively worry. I’m trying to talk to friends and family members more often, and to enjoy precious time with my favorite man even if it is simply sitting in silence and watching him in the chair beside me. I know that my family is watching and prepared to put out the safety net when I need it, and that my most important job right now is to just keep moving one day at a time, with one foot in front of the other. I really need to stop fretting about the things that I have no control over.

So today I am thankful for my job- even if it isn’t perfect, because I truly love what I do and I believe with everything that I have, that I make a difference. I am thankful that I can labor in a community that I love, with people I adore, and families that I sincerely care about. I am also thankful for my daughter, who is making it possible for me to go to work and not worry… as much. Most importantly, I am thankful for my Maker, who promises that “in the flood or the fire, He’s with me and He won’t let go”.

What about me?

I have been fighting the dumps this week. Honestly, I think that part of it, is the time of year. It has been dreary and gross out all week, mud season has begun, yet we still have snow on the mountain. What has melted is revealing dog waste, rocks in the grass, broken twigs and trees around the border of the property. Even the mailbox looks pathetic as it leans a little too much to the left.

Maybe it’s the fact that we are in the month of “when all bad things happen”. My heart hurts. People are getting on my nerves. I am jealous and a little angry. I am exhausted. The yard matches my emotions and I want to find a hole to crawl in. Our “affairs are in order” and now we just muddle through from one doctors appointment to the next. Waiting. Watching. Praying. Trying to live and enjoy the time we have left. It’s lonely and it stinks.

He looks forward to coffee and treats. So that’s what I bring him. His world is shrinking. He is lonely, but he doesn’t want to go anywhere. Going to functions is exhausting. People say, “He doesn’t act like anything is wrong.” It is true. He rises to the occasion, then he goes home and crashes. Sometimes it takes as long as a week to get him back to his normal. He silently stares, plays his game over and over on the iPad, and can’t finish any thoughts. He sleeps all the time or he doesn’t sleep. Organs people can’t see are malfunctioning and deteriorating. He looks fine, but what is seen is not what is broken.

This means that MY world is shrinking. I go to work and I come home just as soon as I can. I pray that he is safe, I FaceTime him at noontime, I encourage a nap, and ask for his Bp. I remind him to eat. I tell him that I love him over and over. I teach, go home, then teach, and go home. That is what I do.

Today I wonder if God is mad at me. I look around and see happy families, and I am jealous of their perfect worlds- or so it seems to me. It seems like some people never experience adversity. Everything is perfect- “a perfect little woman with a perfect little man, with a perfect little family, that live in a perfect little house and drive a perfect little car, going to a perfect little job, where everything is perfect.”

I have cried most of the day today. I am sad. Gut wrenching sad. Like it or not, my husband is dying and I have to figure out what in the world I am going to do and I don’t want to. I don’t want to lose my favorite man. I don’t want to have to go on alone. I don’t want to sell the house. I don’t want to move on. I am angry. I am angry at God because he could fix it with one nod, and he is choosing not to. How could anything GOOD come from losing my husband?

Today’s  solution: we went on a hot date to the car wash, then we took the long way to the ocean. We walked the foot bridge, enjoyed the crisp sea air, people watched, and took in some natural D. It always makes me feel better. I have stopped crying, have put some coffee on, and am preparing to go back at it again tomorrow.

I think the thing that is the hardest right now is that I have spent a lifetime making sure that everyone’s needs have been met: my parents, my children, my husband. What on earth am I going to do when it is only me? Who is going to worry about me? People ask me what I need and I have no idea. I’m just sad, angry, scared, and tired, and I cannot stop. I have to take this journey whether I like it or not, and I don’t.

Dear Younger Me,                                                                                                                                          Don’t waste one single moment, because the rug will be pulled out from under you in a split second. It isn’t fair, but it’s going to happen. Get ready.                                                       Be brave, Me


What Are We Dealing With?

It drives me crazy is that nobody seems to know just what we are dealing with, why he has dementia, or how quickly the disease is progressing. I feel like I have to be my own detective and it makes me wonder what people who don’t have a Type A, perfectionist, bull-dog, advocating for them, do. I want to know, yet I don’t.

He was diagnosed with Frontotemporal Dementia (FTD) retroactive to April 2103 and we are coming up to our yearly check with the dementia specialist. I am anticipating the doctor’s usual question: What have you noticed for changes?

I have to think about it early, otherwise I will just say that I haven’t noticed any change over the past year and we will go on our merry way for yet another year. I need time to reflect and journal in order to prepare.

I tend to measure slow, subtle changes by landmarks on a timeline.

January 2016:    We were unable to manage my husband’s very high blood pressure (At that time, 198/136 was considered a low Bp.) We worked closely with the Primary Care Physician, but could not get it under control.

April 1, 2016: My husband had a stroke, lost the majority of his right side, spent 2 weeks in the hospital and rehab, went home in a wheelchair, and received 7 months of OT and PT with In Home Care before being discharged. At this point, they have done all they can do. It is now up to him to practice. MRI scans from this time indicate that he could and should receive full mobility again over time. He is only 50 years old.

May 2016: The Geriatric Psychiatrist looked at his scans while he was in the hospital from a dementia standpoint. They showed slight changes that were subtle and not diagnostic. There was a little more atrophy, but not localized to frontal or temporal regions. We were told that atrophy is a very crude measure of dementia severity and that repeated neurological testing would give us a lot more information.

August 2016: My husband displayed cognitive decline. He was zoning out more, struggling with answering questions, taking “mini vacations”, getting frustrated, overreacting, had less of a filter, and began having bowel and wetting accidents that left him weepy and frustrated. He had another eye exam and retook his Field Test. He had regressed significantly since April, so was sent to an In-House Ophthalmologist. The doctor said that the regression: loss of peripheral vision & seeing spots and lines, was not eye related. They were dementia related, and the doctor requested to see my husband’s latest MRI. After looking at the images, the eye doctor said that he may not drive and that there is nothing further that they can do to help his deteriorating eyesight.

October 2016: He was admitted into the hospital for extremely low blood pressure, with dizzy spells that caused him to pass out. Doctors removed 2 Bp medications and drastically reduced 2 more. A week later, he was admitted for high blood pressure and an extremely fast heart rate. (It had more than doubled.) Doctors put him back on 3 out of 4 of the meds they had removed the week prior, at a lower dose. They are now testing him for Pheochromocytoma, and have referred him to an endocrinologist to review meds and whether testosterone injections are hedging his Bp up. He has also been referred to a cardiologist to help manage medication, blood pressure, and cholesterol.

Although diagnosed with FTD: Semantic Type. I feel his symptoms seem to present more like Behavioral Variant FTD. The diagnosis is a guessing game based on clinical evaluations and MRI images. That’s one of the frustrations of this disease: Guessing. Lots of guessing.  He still has strong verbal skills, occasionally struggling for words, but not often. I can still have great conversations with him and he has helpful feedback. He is still cognitively strong and a teammate that I have to moderately oversee.

When I reflect back, I note behavioral changes since 2009. The most glaring changes were how he interacted with people. He struggled with getting along with coworkers and customers at work and claimed that the mistakes that he was making, were people “picking on” him. At family gatherings, he would blend into the woodwork and hide from company. He began hanging around our son’s classmates, and became reckless with alcohol- drinking and driving, unsure of where he was or how to get home. He slept on friend’s couches instead of coming home. I left him for 4 days before he noticed I was even gone. He would go places that he forgot he went to, and forget to go places he was sure that he had gone to. He was treated by our PCP for depression and alcoholism. We were told that he was experiencing a classic mid-life crisis. During that time I asked him if he wanted our marriage to work, and he said that he “didn’t know”. It should be noted that we have been together since we were 16 years old and we were, and continue to be, each other’s best friend. After frequent trips to the doctor’s office, he agreed to therapy and to attend AA. He became a leader and when he messed up, he’d mess up with his AA buddies. His “secret friends” as I called them became all he wanted to hang out with. They went to  top-secret places, leaving me in the evenings as many as 6 days a week. I would wait in fear by the phone, praying for his safety on the roads. In July of 2012, he was pulled over with a DUI, he lost his license for 90 days, and had to take a DEEP course before recovering it. He was a Selectman for years, a Sunday School and Youth Group Leader and was highly regarded in our community. His indiscretion was in the paper, affecting his small town reputation, so his self-esteem took a nose dive. He couldn’t forgive himself and because of so much lying, I couldn’t trust him. I resorted to checking his phone and computer in order to keep him safe. It was like having a rebellious teenager in our home again.

He is accident prone, but he has always been. If he can trip over it, run into it, slide down it, or flip over it, he will. He has always been like that. Since 2002, he has had 4 significant blows to the head. He rolled his four-wheeler and was in trauma care for 2 weeks, rolled his pick up, fell off a ladder onto his head, and slipped on ice and hit his head on a snowplow blade. It seems like the dementia just magnifies his weaker tendencies. He loses things, and leaves things all over the property, but he has never been able to find his wallet, he has always lost money, his belt, his watch, and his jacket. Now, he can NEVER find them.

My husband is a sensitive soul with a soft heart. He used to be very in tune with the emotions of others, now he just watches me as I cry. He doesn’t seem to know what to do. He recognizes that I am sad and just watches me. He doesn’t like it, but he doesn’t do anything about it. He doesn’t try to console me by holding my hand or putting his arm around me like he used to. He will hug me back, or close his hand around mine, but I have to initiate most physical contact. When he gets upset, he gets really upset, sometimes losing his cool and his filter. For example, in a crowd, he might yell loudly, “Get the f— out of my way” or if the dog gets loose and stops traffic, he might announce, “If I had a gun, I would shoot her!” He spends a large part of his days playing Solitaire on the iPad over and over again and watching lots of National Geographic on TV. Lately, he has been obsessed with politics and Fox News.

He does do basic household chores: dishes, laundry, sweeps and vacuums the floors & makes the beds. He has figured out how to mow the lawn, work in the gardens, and do small projects on our 7-acre property despite being in the wheelchair. He uses the lawnmower like a golf cart and it gets him everywhere he needs to go. He chases dog/cat dander, becoming more obsessed with cleanliness. It has always been important to him, and he has always been very particular, but it has been heightened.

He is still able to shower, shave, and tend to his physical needs, even cleaning up after himself after wetting accidents.

He has developed a sweet tooth, which is new for him. He has never been a huge sweet eater. He loves to bake, especially Christmas cookies.

He lost his Managerial Position in 2013 because he wasn’t able to multi-task and keep up with the high demands of a busy tractor dealership. However, with a list, he is able to stay focused on household projects. His ability to remember seems to come and go. At times he surprises me and remembers things I don’t. Other times, he can’t remember things that were fairly recent. It’s weird. Sometimes he has it. Sometimes he doesn’t.

He doesn’t always think things through. I have to watch him carefully because he doesn’t always use good judgement. For example, he wouldn’t hesitate to carry a 40 pound bag of pellets up over the stairs, despite his weak right side. However, his impairment in judgement has led to needing to hide the checkbook and credit cards, because he was scammed by a work at home agency just after he was diagnosed, and he has purchased  crazy items over the internet. He has struggled with pornography and heightened sexuality that has been uncomfortable to address. He has become more socially withdrawn and less interested in family and friends. When taken for a day out, 3 hours is about all he wants to be away. He’d rather be home, although he still looks forward to attending church on Sunday. At times, he behaves inappropriately with strangers, especially on social media, losing his social manners by calling people names. He acts impulsively and has broken laws by drinking and driving (not over the past 3 years, although I have no doubt that he would sneak an alcoholic beverage if he could talk someone into bringing him one).

The only real compulsive behavior that I see right now, is the constant fetish over pet hair and the repetitive playing of games over and over on the iPad. He does get into patterns of TV series, but has always been very particular. We had a maroon carpet at our house on the farm and it showed every piece of lint. He was forever picking up pieces off the floor. He leaves us maps when we mow for him, because all the lines need to go the right way, and he has always yelled at people for riding their bikes across the grass, leaving lines.

I am not noticing binge eating, however, he is struggling more with this weight. I attribute it to a more sedentary lifestyle and being in a wheelchair. He isn’t happy with this, because he has always been slim and very physically fit. The extra weight and the graying hair makes him feel aged and he is very self-conscious about it.

There are some deficits in planning and attention, and he continues to take “mini vacations” even mid-sentence and will act like he is just stopping to regroup. Sometimes he will come up with the rest of his thought. Other times, he ends up abandoning the sentence.

The incontinence that was an issue at the end of the summer, has become less of an issue of late.

I still monitor his medication and when he lost the ability to tie his shoes, he never regained it. He sleeps a lot (10-11 hours/night), a naps nearly every day. (3-4 hours/day). Sometimes he acts 6, sometimes he acts 13, and sometimes he acts 50… but he is still 50, and still my husband, and so it is a delicate dance. He deserves respect, he needs to be needed and to feel like he is taking care of me, but I have to watch over him. I watch from afar, ready to step in and help if necessary, but nevertheless watching.

What does this all mean? We are told by the Neurologist, that the Chronic Migraines, which he is treated for every 3 months with Botox is not dementia related. We are told that the high Bp is also not dementia related. However, the Ophthalmologist reports that his decline in eyesight IS dementia related. We are told that his MRI shows atrophy, but not localized to frontal or temporal regions.

He is a complicated medical challenge with arthritis, Chronic Migraines, High Bp, High cholesterol, low testosterone, sleep apnea, depression, acid reflux, and multiple allergies. The most recent diagnosis: a beat up rotator cuff. The Orthopaedic Surgeon would like to repair the torn muscle and bone. This will result in a  3-6 month recuperation and most likely 9 months before being “back to normal”. This was originally scheduled for the day before Thanksgiving, but has been postponed until he is medically cleared. Personally, the thought of going back to square one, with round the clock care, and therapy, is more than I can agree to at the moment. Totally selfish, I know. This has left him frustrated, angry, and quieter than usual. I hate it when he is disappointed with me.

I can’t help but pray for a miracle. Maybe more Neurological testing would tell us the speed of progression and what type of dementia we are working with. Maybe something can be done to slow down the progression, or perhaps he has been misdiagnosed. Maybe the cognitive changes are a result of Blood Pressure that has been difficult to manage and side effects to years of a high level of medication (15-25 pills/day). Perhaps the 4 significant blows to the head are the cause and his brain will heal over time. Maybe just maybe everyone is wrong, there is a simple explanation, this has just been a bad dream, and we will enjoy the golden years together after all. Is it wrong to hope?